you a not a burden
This is a post that I wrote in my head last night as I am in
the middle of potentially changing supported living houses but staying with the
same company and I can’t remember something heartbreaking. I can’t remember the
last time someone physically said they love me, or I am doing good or congratulated
me for doing something well, as my family often has concern for me, and I don’t
see that my actions have consequences for other people.
But please don’t feel sorry for me first and that my family
and friends do they do it by there actions and this has lead me to some really interesting
feelings of knowing I am an adult but at the same time feeling really alone in
the world as I see my friendship group that are “ able bodied” go to work and
have the arguments about the kids and I really feel like I have missed that boat
on having a stable romantic relationship due to me not being able to really
trust anyone and that actually includes myself and my support team in the house
as they have a lot of subtle power and don’t get me wrong they are amazing but
deciding what time I get my tablets to prevent seizures rather than coming down
and seeing that I have taken them and this is for them a very complex issue due
to the fact that they are looking after two clients and since moving into this
house I have felt more alone than when I was living with my parents it is due to
the subtle attitude of support workers favouring my house mate over me and
using “ my right to privacy” as cover when I see that there is times that it’s
much better to have my safety first and
we actually talk about my needs but due to the behaviours of my house mate I am
feeling like I am getting the scraps of care and I know that this isn’t correct
and I know it is my delusional thinking.
The same with my family I know they love me Mum dropped off
a bag for me to pack for a holiday, as my other one was too small, making sure that I have some level of community
engagement as I don’t fit into the day centre environment but I can’t say that
I am not jealous when they head off in the bus and I hear them going on there activities
as well. I am waiting on extra funding and I know that I choose to say home and
record and that nothing is stopping me from having people on the channel but I
do forget about this fact as well.
However it got me thinking about relationships with disabilities
again and how we seem to have one of three extremes, the person who is cared
for by family and its practical support like my family and team do, like ensuring
I have clean clothes, food in the fridge and stuff to do, then we have people where
the family trust the support team or then we have that the support team doubles
as family and family isn’t involved.
So this also going back to the family goes into the
disconnect with love languages as well, so there are many articles written on
love languages and I need to hear that I am doing OK as well and I see that I have
a different path but it leads me to the question as we are seeing that this generation
that is reaching the workforce now can’t afford to date and isn’t able to
afford to start families so they are lonely. [i]
Also, we see that there is another thing that isn’t talked about,
having families with a disability. We see that this is actively discouraged in
some facilities due to having to protect other's privacy and this I see is starting
to change but we need to have a balance, to be able to have respect both ways
and I know in the past that I haven’t been respectful support staff and family
but this is the thing if I can’t have bad days in where I live where can I have
the bad day I have nowhere other than my parents place. But
what if they decide to sell as everything in a disability facility has to be documented
and people need to “check in with me” due to past behaviour and personality clashes
with support workers this has led to me not being able to unmask and I need to
be able
This leads to the manipulative behaviours that I have talked
about in the past so let’s continue the conversations around disability and
relationships and the need to be safe around support staff and the extreme
balancing act they need to have to be able to support others and to be able to
understand them as well, to be able to call out manipulative behaviour’s and to
see that behaviours is a form of communication and that this is where some
support staff need support in dealing and changing this behaviour from clients
to be able to help them archive there goals without restricting them a bit to
much as well. So, I will be doing a post and video on behaviour of concern.
When I went to post this it reminded me of this very early video and I do apologise for the horrendous, sound in the background let's thank god that I have wanted to edit the sound as well. It does show how far I have come but I still feel like a child in an adult body because I haven't "hit" the milestones that are considered "normal" by society and this is a blog post that I am going to go into around disability and infantilization of disability and the lack of accountability that is leading to people to not understand how the "real" world works.
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